This Is MS Multiple Sclerosis Community: Knowledge & Support

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Kacey wrote:You kids will NOT be disappointed with Dr. Mehta. I have heard from so many people about what a difference they see in my husband. He just emits such a new energy, it is almost tangible. I want to hear from everyone how they made out! This makes me so happy!!This is truly the breakthrough we have been waiting for. Be well!! I know you will be!

Vivianne766 wrote:You are in my thoughts. I will have positive thoughts for you.God help us all.Today I got a call from my GP telling me that I am anemic and I need to take Iron............I don't think I will.Has anybody heard of how Dr. Hubbard is doing re treatments?Anyone been to the hubbard foundation for treatments?sorry didn't mean to change the subgect.

I read on facebook that the Hubbards are still booking appts for August. Their prices are down to $7500 if you have no insurance (there must be a fee on top of that per stent if needed).

Maybe we need a Dr. Hubbard thread?

Anemia is an issue for CCSVI...you want your blood to have red blood cells so they can carry oxygen to an underoxygenated brain! Maybe avoiding pills and cereal (because of the free additive iron) and instead getting it through natural sources would help with anemia? I take green tea supplements because they are supposed to cross the BBB and bind to iron in the brain but they will also bind to iron in food. So maybe take these not at mealtime so that they do not interfere with that? Sorry if I am overstepping here, this is what I would do...and I hope you find ccsvi treatment soon.

hannakat wrote:Talked to Megan from Dr. Mehta's office. Doing venography with diagnosis .... it would be MORE frustrating for me to have him perform the venography, see a problem, not fix it than it will be to wait for testing/treatment.

Taking the test results to a different doctor (even if I had the capability to find someone....not everyone has a wife or husband to do the leg work for them) I wouldn't want just any IR or vascular surgeon doing it. I will wait for someone who is fully vested in this already.

So, no, I'm not pursuing testing without treatment. To pay for travel, hotel, etc., without treatment is not something I can do....financially or mentally!!

They are calling people in the order that they contacted Dr. Mehta back in February when they first started recruiting for their study. Because the IRB approval is taking so long, they are treating people outside of a study through insurance. I got the call as well a few days ago.

dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />

Thanks again to you for pointing me in Dr. Mehta's direction back in February. I was actually wondering about timelines... when had you first made contact with Megan if you don't mind? Just trying to figure out when I might be getting a call. I contacted Megan on Feb 11th or 12th. Thanks.
Deb

Deb, I think I contacted them about a week earlier than that. I can't remember for sure, but it was early February. I heard back from them a week ago.

I've decided not to go with Dr. Mehta, however, since I'm already on Dr. Siskin's and Dr. Sclafani's lists. But my impression of Dr. Mehta is quite positive, from what I've read here and heard from those who've had contact with him.

"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Forgive me, I am now here and I am a complete bundle of mixed emotions. I signed up for a study in Albany, being that it is only 3 hours from me. When I heard that they did not get grant approval, I just accepted it with the understanding that I will just have to keep waiting. My husband and I went on a way overdue retreat for a week with out any children. (We have 7, his, mine, ours) Mid week, I got the surprise of a lifetime. Megan called and let me know what was going on. Of course I jumped at it. I met Dr. Mehta and was scanned yesterday. Both veins show blockage. I am reading these posts and I find myself saying "Thats what I thought too! Thats how I feel too!" The greatest thing about Dr. Mehta is that there just aren't any words that can truly justify the kind of person and doctor he is. I have never met anyone in the medical profession that had the absolute sincere compassion and just love of people as he has. I have also never had the pleasure of hearing a doctor give the credit of our design to God by name. All I could do is thank him for allowing himself to be open to the possibilities and for answering his true calling. Dr. Mehta was born and prepared for this. We only have one Savior, but many who are called to heal. Anyway, of course, I want this procedure more than anything, but at the same time...I have lived with this disease for 15 years. It has made me who I am. It is who I have been. My symptoms began as a young teenager and I was diagnosed finally at 19. I don't know anything but life with MS. I want to feel better more than anything, but I am terrified at the same time. I have never met anyone who has a similar experience. Most people I hear from had the onset begin later or mid-life. They remember what it was like to be "normal" and are excited at the possibility. I am going through with this because I do want to experience life. I just wish I wasn't so scared. And "normal" people just don't understand. God's Blessings!

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